Day 322: Out and About

Day 332: Elliott is all smiles at the dinner table

Elliott continues to do well. Now that he is in the maintenance phase of chemotherapy he receives low doses of most of his medication at home and only has to visit the oncology clinic once a month. Like his previous visit, what few issues he had with chemo only lasted a few days. He is two weeks out from his most recent visit, so this week he has been doing great!

Kyllan and I have been adjusting to the new routine. It actually feels a little weird to only go to the clinic once a month. All the clinic and hospital visits had become part of our daily schedule. Now I keep feeling like I am forgetting an appointment. When we take Elliott out I have to remind myself that it's okay for him to interact with other kids and that I don't need to pounce on him when he gets close to someone. If I don't watch it, I tend to find myself hovering over him at playgrounds. Kyllan is doing  a much better job than I am at just standing back and letting Elliott enjoy being a normal little boy.

Day 305: Elliott's first trip to the zoo in over a year. He was amazed to see all the animals from his books at home.

We now have family memberships to the Dallas Zoo and the Perot Museum of Nature and Science. We only made it to the zoo once before all the rain started in Dallas, but now that it has ended, hopefully, we can get back there. Both the kids love the indoor play area at the Perot Museum. It has become our go to spot when it has been too hot or too rainy outside and we want to get them out of the house.

Also, Elliott has big news! He returns to daycare on July 6th. Laurel is so excited and telling everyone that "my baby is going to go to school with me!" Throughout chemo she was told that Elliott would return to school once he started feeling better, so this is a big indicator to her (and us) that he is in fact getting better. When the topic comes up she usually cheers and runs a lap around the house.

Thank you everyone for your continued thoughts and prayers. Elliott continues to grow stronger everyday.

 

 

Day 300: Birthday Boy

Day 300: Elliott is excited for his birthday!

Elliott celebrated his 2nd birthday Tuesday. This past Saturday several of his old classmates joined us for his party at the Perot Museum of Nature and Science.  Elliott loved the party! After pizza and cupcakes in one of the party rooms the kids spent several hours in the children's museum and exploring the exhibits. Elliott continues to have a great time at every opportunity he has to be around other kids. I literally had to pull him away when it was time go. At the beginning of the year we were not even sure he would be able to have a party. Seeing him have so much fun playing with other children was a great reminder of how far he has come.

Elliott continues to do well with the maintenance phase of chemotherapy. Like before, he moved a little more slowly and wanted to be held a little more for a week or so after this most recent clinic visit, but he bounced back and has been laughing and playing since. It has been a busy month for Elliott.  He helped us celebrate Kyllan's birthday and Mother's Day. Now that he can get out of the house, his nanny has been taking him to various activities during the day. Playgrounds and the library have become frequent stops. He even went to a former classmates birthday party.

Elliott returns to the oncology clinic next week for more chemotherapy. This will be his 3rd visit since starting maintenance.

 

Day 297: Family photo at Elliott's birthday party

Day 289: Kyllan reads a Mother's Day card from Laurel and Elliott

Day 185: Elliott watches as Laurel dances to birthday music

Day 277: Getting into the Swing of Things

Elliott has been doing great the past two weeks. He is full of energy and more engaged then we have ever seen him.  He absolutely loves getting out and interacting with people. Any concerns that he would be shy and timid are gone. I think he may actually be an extravert. He is running faster, trying to talk more, and playing until completely exhausted. His appetite is starting to pick up and he started to grow some hair back. (This time it is black, and not blonde like it was after Christmas.)

Day 268: Elliott playing with other children at a birthday party

The weekend before last Elliott attended a birthday party. It was his first since his sister's party for her 3rd birthday last July, just days before he was diagnosed. Even more gratifying, the party was for the son of close friends who recently moved to the area. Elliott was too sick to play with other children when the possibility of them moving to the area initially came up around a year ago. When they came to town to do some house hunting we had to keep the children separated when they stopped by for a visit. For so long Laurel has been Elliott's only friend. It will be rewarding to watch him form some new friendships of his own.

Today, Tuesday, Elliott returns to the clinic for a long day of chemotherapy. This is part of the maintenance phase. We hope to see him quickly bounce back.

Day 264: Something Like Normal

Elliott continues do well since starting the maintenance phase of chemotherapy. Now that he can finally get out of the house, we have packed so much into the past two weeks.

Day 253: Elliott enjoys a few snacks at the Easter party while his sister looks on

On Good Friday I took Elliott to an Easter party at Laurel's school. This was his first actual interaction with other children in 250+ days. I was quite nervous headed into the party. How well had Elliott's social skills developed? Would he be scared of the other children? Would he get sick? With in minutes of our arrival one of the teachers sat a chair next to Laurel and asked if Elliott wanted to sit down. To my surprise, he walked over, pulled the chair out, scooted himself up to the table, and started eating. When he was done he got up and played with the other kids. He didn't miss a beat. It was really amazing.

Day 261: Having a good time at the museum

That Friday evening Laurel and Elliott spent the night with Kyllan's mother. This was the first time that Elliott spent the night someplace other than our house or the hospital. (He literally had just weaned from his mother's milk the week his symptoms appeared, so he never had the opportunity to spend the night away from Kyllan before he was diagnosed.) This gave us a much need break and also happened to be my birthday.

This past weekend we took Laurel and Elliott to the Perot Museum of Science of Nature and Science. This was our first real family outing since Disney World in May of 2014.   Planning our trip to the museum, I had this beautiful image of a magical afternoon of my children being filled with wonder and amazement .Soon after our arrival they gave me a reality check and reminded me how exhausting two small children can be. Ultimately, we had a great time. Sunday we took the kids to the mall while we ran a bunch of errands we have been putting off for the past several months. I think it was the first time any of us have been in over a year. I would say both kids enjoyed getting out of the house, but it is more accurate to say that we all enjoyed getting out of the house. Big or small, I am looking forward to our next family excursion!

Day 251: Maintenance

Day 250: Elliott starts the maintenance phase of chemotherapy. Going forward he will only have to go in for an infusion once a month.

Elliott started the maintenance phase of chemotherapy this past Tuesday! He received the OK to go out in public and to interact with other kids! It feels like such a foreign concept. The last time Elliott played with a child that was not his sister was July of last year. Since then, between a few family dinners at quiet restaurants and a few errands, he has been out in public less than 10 times. It feels like he has not had the chance to be a little kid. But now that is all in the past! Birthday parties, play dates, zoo, and science museum here we come!

Elliott will be in the maintenance phase of chemo until November 2017. Though Elliott will be taking half a dozen medications throughout that time, they will not be near the level of toxicity of what he has been receiving up to this point. Even the oncology clinic visits will be down to once a month. Over the coming weeks he should begin to feel better and better. For months Kyllan and I have been listening to everyone tell us that maintenance is when parents can begin to breath a little easier. I don't know that we are there yet. I think we need a couple of weeks of seeing this phase go well. But, we have a lot to look forward to!

Our goals for the next month include seeing Elliott respond well to the new medication, continue to gain strength, and for all of us to spend some quality time as a family as we venture out of the house! Thank you to everyone that continues to hold Elliott in their thoughts and prayers. It means a great deal to the Cody family.

 

Day 244: Elliott helps mommy and Laurel prepare dinner. (His sister demanded chicken, french fries, and lemonade.)

Day 236: Elliott had a few slow days at the end of delayed intensification phase of chemo, but he has had a string of good days since.

Day 215: Snow Day

Day 208: Elliott starts the second half of delayed intensification.

Elliott was able to start the second phase of delayed intensification last week. Elliott's nanny and I took him to his appointment that Tuesday thinking that there was no way his counts would be high enough and that we would be in and out of the clinic in about 15 minutes. After spending a week in the hospital I was looking forward to a week without Elliott having chemo. We were shocked when the nurse came back in the room and told us we were ready to start. Chemo that day meant a lumbar puncture and several hours of fluids, something I had not planned on. It also meant 4 chemo appointments last week. This completely caused havoc with our schedules, but not as much as the snow days this past Monday and Tuesday. That's right, less than 1 inch of snow closed down the entire Dallas/ Forth Worth metroplex. A cooped up, hyper active Laurel and a low-energy Elliott on chemo do not mix. Luckily Elliott's nanny was able to help us out, including watching Laurel while Kyllan went with him to chemo on Tuesday.

Day 212: Elliott enjoy his 6th family outing in 6 months.

Elliott continues to do well with the second half of this phase. He is nearly bald, again. He walks a little slower and he is definitely cranky and irritable, but he continues to be all smiles when Laurel is around. The two of them played non-stop when he arrived home from the hospital Sunday before last. Its a matter fact, Elliott was doing so well this past weekend that we took him to a quiet restaurant for dinner. This was only the 4th time we have eaten dinner out since he was diagnosed and I think it was the 6th time he has made it out of the house for something other than a doctor's appointment or hospital visit in 6 months. I don't know who enjoyed it more, Laurel or Elliott. Some family friends took Laurel on a play date earlier in the day, so this was definitely the busiest day Laurel has had in the last 6 months too. On a roll, we took Elliott to a furniture store the next day once the weather started getting icky and fewer people were out. He loved every second of it and become very upset when we didn't come home with a rug he picked out. It was good to get them out before the weather turned bad. It doesn't look like Elliott will be able to take any walks around the block this next week as we wait for the temperature to rise.

Day 213: He just kept pointing at the rug and yelling "ball!"

Elliott has about twenty or so days until he starts maintenance. It's weird. Though maintenance is going to last 3 years, it definitely feels like we are getting ready to turn the corner on his treatment and be headed down hill. We hope that the next stage is everything it is hyped up to be. I can't wait to take Elliott to a birthday party or to the park. He literally has not played with a child other than Laurel in 6 months and he is getting closer by the day.  That being said, we know that we can't get ahead of ourselves.

This week we are taking it one day at a time. We want to keep Elliott healthy and avoid illness and hospitalizations.

Day 208: Elliott and Laurel spending some brother sister time after he returns from the hospital

Day 207: Home Sweet Home

Day 205: Elliott takes a wagon ride around the oncology floor. This has become one of his favorite activities. A nurse showed Rachel how to tie the IV pole to back of the wagon to free up one hand.

After seven days in the hospital Elliott returned home Sunday afternoon. It turns out he had a Pseudomonas aeruginosa infection! For those of you that don't know, P. aeruginosa also happens to be the microorganism that I study in my research laboratory. After all I've done for this bacteria, I can't believe it treated me like this!

Other than his initial diagnosis, this was Elliott's longest stay in the hospital. He looked pretty bad the first night, but after about 24 hours he was back to his usual smiling self. This hospitalization was an exhausting all of us, with me and Kyllan trading off on who spent the night at the hospital with Elliott and who went back to the house at night. Due to the severity of the flu season children under 13 are not permitted on the oncology floor with all of the immunocompromised patients, meaning that Laurel was unable to visit. She used this as an opportunity to use her new favorite word and tell us how "frustrated" this made her. This is usually followed by her crossing her arms and stomping her foot. I assure you, it is not as cute as it sounds. Actually, I find it quite frustrating.  

As I mentioned in my previous post, delayed intensification finally caught up with Elliott, culminating in this hospitalization. His hair has always been a good indicator for just how strongly a particular phase of chemo is affecting him. He had a head full when he was admitted to the hospital. By discharge he had very little remaining. We can see the steroids taking effect as well, resulting in swollen checks and an appearance commonly referred to as "pumpkin face." This should go down rather quickly now that he is off the steroid. 

This Tuesday he has an appointment to check his cell counts and determine if they are high enough to start the second half of delayed intensification. Based on his counts in the hospital there is actually a chance that they will be high enough. If so, we expect it to go much like the first, starting off with a couple of good weeks and ending with some  tough ones as his immune system losses its ability to fight off infection. 

For right now, we are just going to enjoy having Elliott home and spending some time together as a family. 

Day 203: Elliott is happy to spend a night with mom after two nights with daddy

Day 199: Two days before the hospitalization. Not as mobile as when he is feeling good, Elliott decided to lay down and color for a bit. Notice the big difference in the amount of hair when compared to the picture above.

Day 201: Hospitalization #5

We didn't realize that it had been so long since our last post. At the end of January we had a family medical emergency involving someone other than Elliott. Fortunately our family is now doing well and it appears that our biggest concern is the disruption it caused to everyone's schedule.  We are just now getting caught up .

Day 201: Elliott grabs a bite to eat with mommy in the hospital room. (The bandage is holding the needle in his port in place so he can receive fluids and antibiotics while in the hospital. This is usually covered by his shirt.)

Elliott is almost done with the first half of delayed intensification. The first two weeks went great. He was active, playful, and full of smiles. This past week, however, he began slowing down. By Thursday it was clear he was feeling crummy. This weekend he didn't want to move or play at all. He was whiny and wanted to be held all weekend. Again, Elliott was a kid who never use to cry. Even now, with all the things that are happening to him, when he whines and whimpers it is a clear indication that something is very wrong. Sunday night he had a slight fever. By the time of his oncology appointment Monday morning the fever was high enough that he was admitted to the hospital.  He is already looking much better, but it looks like we will be spending at least two nights here.

Other than the hospitalization, Elliott has lost a little weight this round. We were a little surprised by this, as he is on a medication that causes increased appetite and he has been eating everything in sight for the past two weeks.  Also, his hair is beginning to fall out again. It grew back blond and brown the first time. It will be interesting if it continues to do so as it starts to grow back for the second time.

Next Monday is the end of first half of delayed intensification. We will have to see if his absolute neutrophil count (ANC) is high enough before he can proceed to the last 30 days.  We are looking forward to getting through this phase and beginning maintenance phase.

Day 180: First Couple of Days of Delayed Intensification

Day 179: Elliott sits with his nanny while receiving his chemotherapy infusion

This past Monday Elliott's cell counts were high enough for him to start delayed intensification. It is bittersweet. We are excited that to move forward with this next phase of treatment, and getting closer to the end, but it is also distressing to see just how quickly the side effects of the medication have manifested.

Elliott went four weeks with no chemo, the longest since his original diagnosis. In that time he built up enough strength to start walking, his appetite returned, he gained 2.5 pounds, and his hair began to grow back. In less than 24 hours we have already seen his energy level plummet. He also seems to have lost his appetite, but that may have more to do with the horrible taste of the medications, and less to do with their effects on the body. On a positive note, Elliott has already shown us that this phase of chemo is not going to keep him down. He found the energy to color with Laurel, which resembles a contact sport when she is involved.

Day 177: Elliott walking

Day 172: Delayed Again

Once again Elliott's ANC levels were too low for him to begin delayed intensification. He will have to wait another week to begin the next phase of chemotherapy. Again, this is not unusual and nothing for us to grow concerned about.

With a 3rd week off chemo Elliott has grown even stronger. Saturday he took a few unassisted steps. Sunday he took several  steps on separate occasions. By Sunday night Elliott was walking all over the house. It was only a few months ago that he was too weak to even crawl. Seeing him walk has been really encouraging as we prepare ourselves for this next round. We expect him to lose strength and weight during delayed intensification, but now we have seen with our own eyes that he can bounce back quickly when chemotherapy ends.

Day 165: Delayed Intensification Delayed

After 15 days off from treatments, Elliott was scheduled to start the next phase of chemotherapy today.  As we previously mentioned, this next phase, delayed Intensification, is considered the most difficult. Because this phase of chemo does so much damage the immune system, patients must have above a certain number of white blood to even begin. Unfortunately, Elliott's white cell count was not high enough today. This is similar to the delays before the phase we just ended. We will try again next Monday.

Elliott has been doing well since his last treatment. He has had a few tough moments here and there, but he has remained happy and playful. His appetite has really picked up recently and he managed to gain another pound. The kids enjoyed Christmas. Elliott is too young to understand what was going on, but he is enjoying having a few new toys around. After attending so many birthday parties, Laurel is well antiquated with the concepts of gifts. She gets just as excited watching other people open their gifts as she does opening her own. You have to be quick about it though. If you take to long opening your gift, she will offer to do it for you. Included under our tree this year were several gifts from Elliott's oncology clinic. We received gifts, and stockings, for both kids while Elliott was in the hospital the week before Christmas. It was incredibly kind and thoughtful. Christmas shopping was just another thing we did not have a lot of time for this year. I will post pictures from Christmas day soon.

Day 153: Elliott taking a break from opening gifts Christmas morning.

Day 153: Merry Christmas!

We are home for Christmas!

Elliott completed his fourth high dose methotrexate treatment this past week and returned home Sunday. He has been very tired, but is doing well. 

This was Elliott's last treatment for this phase of chemotherapy, interim maintenance . We will start the next phase, delayed intensification, this January. We will likely have 2 weeks off so that Elliott's cell counts can recover before we begin. We have repeatedly heard that interim maintenance is the most difficult phase of treatment for leukemia patients. I've been so focused on the phase that we just completed that I never bothered to find out why. I think I will save looking over that information until after Christmas.

Below is a video of Elliott once he discovered that he could use his IV pole to steady himself and walk around the hospital room. He is gaining strength everyday. With the two week break from chemo we may see him take some steps soon!



Day 141: Still Doing Good After More Chemo

Elliott was discharged from the hospital this past Sunday evening. He has had a little nausea since then, but he appears to be responding well to the chemo. No mouth sores yet, but he does seem to have some discomfort. He gained close to a pound this week, bringing him back to his mid-November weight. He is tiny, so this is a big deal for us. Elliott has been very active all week and is starting to show signs of frustration at his limited mobility. Hopefully this will encourage him try walking on his own soon.

Day 135: Family photo with Santa during Christmas party

The hospital happened to throw a Christmas party for the oncology patients this past Saturday. Both Elliott and Laurel were already at the hospital, so we decided to stop by. This was Elliott's first time at an event with more than eight people since Laurel's birthday party a few days before he was diagnosed. He was a little worn out from his treatment and was not all that interested in the festivities, but he clearly enjoyed the chance to be out of his hospital room. Because these hospital visits have been for treatments, and not because he was sick, Laurel has been able to spend a lot of time with him in his hospital room. It has been good seeing the two of them play together.

Kyllan put up the Christmas decorations the day after Thanksgiving, but we never found a good time to put the last few ornaments on and light the tree. With Elliott out of the hospital the kids we were finally able to put on the finishing touches and light the tree. It is beginning to look a lot like Christmas.

Day 136: Elliott puts his ornament on the tree with some assistance from mom

Day 132: Thanksgiving and Round 3

This year the Codys were thankful to be able to spend Thanksgiving at home. For a few weeks there was a question on rather Elliott would be in the hospital for both Thanksgiving and Christmas. Fortunately everything worked out so that Thanksgiving fell between chemotherapy hospitalization #2 and #3 and we finish #4 just before Christmas.

Day 126: My mother gets Elliott ready for Thanksgiving dinner

My parents were in town. Unfortunately Kyllan's parents were unable to join due to an illness in the family. Kyllan's mother did, however, prepare some food for us. The long weekend was a good opportunity for us to catchup on some much needed rest.

Tomorrow, Thursday, we head to the hospital for the 3 round of this phase of chemo. Like before, we anticipate being in the hospital for 4 days. Elliott responded much better to round 2 than he did round 1. He had significantly less nausea and seemed to be his usual cheery self more often than not. Hopefully he does well this round too.

Day 126: Sitting down for Thanksgiving dinner

Day 122: Two Rounds of High Dose Chemo Down

Day 119: According to Laurel, she is his best friend.  He certainly looks happy to see his best friend

Sunday marked day 122 of treatment for Elliott and he continues to do well.  He was admitted this past Thursday for the second of four hospitalizations to receive a high dose of methotrextate.  We were able to come home this morning and unlike last Sunday when Elliott experienced nausea and vomiting, he has not experienced any side effects so far. Hopefully he will feel good this week heading into Thanksgiving.  The hospitalization, again, went pretty smooth.  Laurel came to visit the first night and Elliott was glad to see her.  William's mom, Bebe, was in town this weekend as well, so Laurel had a chance to play dress up and get the 1:1 time she enjoys so much. 

The only hiccup was Saturday night when his the needle the was connected to his port somehow became dislodged and caused fluid to infiltrate into the tissue in his abdomen.  Fortunately it was only saline solution, so his body will reabsorb most of it and the swelling will continue to go down.  The downside of the needle dislodging was they had to reaccess his port with a new needle. There really wasn't time to numb his skin like we usually do, so I was a bit nervous he was going to feel the needle, but I think he was more upset about being held down to keep him still more so than feeling the stick from the needle.  Once it was re-secured, he immediately calmed down and went right to sleep.  I think that was enough excitement for him for one day, not to mention the excitement back at home with the 3.3 magnitude earthquake that had William thinking Laurel was doing some major acrobatics in her bedroom.   We had another 2.5 magnitude earthquake today that William and I both heard (not necessarily felt), but we thought it was the movie Laurel and his mom were watching :-) Crazy! 

Since the weather was nice today, he got to go outside on the swing set and on a stroller ride with Laurel and Bebe, so it was a great way to end the weekend. 

He will go back two more times for methotrexate before Christmas, but until then we hope he will be in the mood for some turkey and ham this week.  We certainly have a lot to be thankful for this year!!

Day 119: Such a happy boy.  This is what I get, when I say "smile Elliott!".

Day 112: Feeling Yucky

Last week, Elliott began the 3rd phase of chemo, the Interim Maintenance phase after a two week delay due to a fever and low counts.  This phase will last through the end of December and will include four 3-4 day hospitalizations.  We completed the first hospitalization last week and were grateful to move forward after being delayed.  The reason for the hospitalizations is because every two weeks, Elliott will be receiving a high dose of methotrexate.  The high dose requires 5 1/2 hours of hydration prior to administering the chemo, then the methotrexate infuses via IV for 24 hours, followed by a rescue drug and even more hydration to help cleanse it out of his system so his the levels of chemo in his blood are low enough for us to go home. 

It was kind of appropriate that this wagon was from the Congenital Heart Surgical Unit (CHSU) since that was the unit he was first admitted to when we initially came to the hospital.  If you recall the pictures from day 1 when he was connected to everything, that was in the CHSU

Strolling around the floor with the chemo still infusing

We have been so blessed that Elliott been tolerating treatment so well thus far, but this past week proved to be very challenging.  The hospitalization itself went fairly well.  Elliott was admitted on Thursday and we were able to go home Sunday morning.  Elliott loves to "people watch" on the floor, so he likes for us to leave the door open and wave as people walk by.  We know most of the nurses and techs on the oncology unit by now and they know him, so he has lot of buddies that come check on him.  By day 3 in the hospital, I think he was getting bored and was ready for a change of scenery.  He enjoyed some time in the playroom on Friday with Rachel and then on Saturday, William was able to locate a wagon on the floor and spent the next hour plus riding around the floor with him, which he thoroughly enjoyed.  He did not want to get out.  Once I arrived later on Saturday to give William and break, he convinced me to go exploring on the floor again. 

On Sunday morning, Elliott was able to go home and fortunately for William, we were home well before the Jaguars game came on.  Since he has been home, Elliott has been pretty fussy and it is very clear to us now that he is not feeling well and is frustrated not being able to express what is going on.  He has been experiencing nausea and even some vomiting (both side common effects of the methotrexate) and also has developed mouth sores (another common side effect).  On top of that, he is teething and has several new teeth coming in, and is drooling like crazy!!  It's a good thing we have such a large supply of bibs because he is going through a bib an hour it seems.  His appetite has been affected and his sleeping patterns are a bit off, so it's been hard because we want to help him, but its hard to know the best way to comfort him.  For the most part, we just cuddle with him and try to play when he is up for it.  Laurel has been with my parents since Friday to allow us to focus on Elliott while he was in the hospital as well as try to keep up with work, but Laurel came back home today and Elliott was glad to see her.  She always seems to cheer him up a bit, so they enjoyed a little play time and she got Elliott to imitate some of her "car sounds" as they played with cars on the play mat.  Elliott has a oncology clinic appointment today, so he will get his usual labwork done and we have a list of questions and concerns to talk to the oncologist about, so hopefully we will get some helpful tips or reassurances.  William is taking him to the appointment while I go to work, so I already passed on my list of questions to him :-).  At least he won't have chemo this clinic visit, so it should be pretty straightforward.  He does have an oral chemo medication that he is taking, but it has a fruit flavor that he doesn't mind too much.  It's too bad I can't say the same about the antibiotic he takes on Mondays, Tuesdays, and Wednesdays.  He absolutely hates that, but we certainly want to make sure we can prevent infections, so we are going to try to locate a different flavor or at least get some flavoring to help. 

Class is in session...

I mentioned my parents kept Laurel for the past few days to give us a break and time to focus on Elliott while we are at home, which worked well since he has been feeling to yucky and Laurel needs attention too, but the weekend before, my mom came over to play with the kids so William and I could do work. My mom, being the educator she is, helped Laurel set up her "classroom" upstairs with all her dolls and stuffed animals.  So, special thanks to my mom for keeping Laurel occupied and thank you to William's mom for supplying such a large quantity of students (dolls and stuffed animals) to educate :-)

Hopefully we will have another update shortly and perhaps one of us will make a post, but in the meantime, we appreciate the continued prayers from everyone who is supporting us from near and far through this journey.  The support from our family, friends, extended family, church friends (old and new), care ministries, daycare, neighbors, co-workers, and even people we don't know is deeply appreciated.  We apologize we haven't been able to respond expression, but know it means a great deal to our family and is deeply appreciated.  I read some blogs and support groups and I am amazed that so many people go through this journey alone or without a support structure and thankful we are not in that situation. 

 

Day 105: Trick and Treat

Day 99: Halloween

The Trick? We are still waiting for Elliott to start the Interim Maintenance Phase of his treatment. After the fever delayed things last week, this Monday his absolute neutrophil count was still too low to begin the next phase of his chemotherapy. We try again Thursday morning. If his counts are high enough and he begins the next stage he will be admitted to the hospital for what will likely be four days.

Day 99: Getting ready to start the evening

The Treat? Elliott was able to go trick or treating on Halloween. He really liked his Spiderman costume, and was trying to put it on all week. We pulled him along in his wagon while Laurel went door to door trick or treating. He doesn't get outside too often, so he was very excited to have a chance to explore the neighborhood. He was clapping and cheering the whole time! I think part of it was just being excited at how excited his

 

Day 99: Elliott is upset that the wagon is not moving. We never did mange to get a picture of them both smiling at the same time.

Day 96: Hospitalization #4

William and I expected to be in the hospital this week for Elliott to begin the Interim Maintenance Phase of his treatment, but we ended up coming in a little earlier than expected.  Fortunately Elliott is doing well and we should hopefully go home tomorrow.  

Elliott spiked a fever of 102 on Sunday evening.  Fever is our only indication that Elliott may have an infection, so we were told from Day 1 to expect that he will have fevers and have to be admitted to immediately begin treating with antibiotics to help fight any potential infections.  Elliott felt warm all weekend, but did not have a fever until Sunday night.  We took his temperature about 3 or 4 times waiting in between readings to make sure it was not just an outlier.  After a call to the oncologist, he told us to bring him in so they could start him on antibiotics.  His fever went down within a few hours and after filling up on IV fluids, getting a blood transfusion to bring up his red blood cell count, and several doses of antibiotics, he seems to be doing much better. 

The phase that just ended, the consolidation phase, had several straight days of chemo and while the chemo does its job to fight off any leukemia cells, it kills everything else in the process, so it took a toll on his blood counts.  One of the main numbers we monitor is his absolute neutrophil count (ANC), which measures the amount of white bloods cells that fight infections.  In general, if his ANC is 500-1,000, he is at moderate risk for infection.  Below 500 puts him at high risk for infection.  Elliott's ANC level apparently went all the way to 0!  That essentially meant he had no immune system or no blood cells to help fight any infections.  It came up to 100, but they are hoping it will come up a little more before they send us back home to Elliott's bubble.  :-)  This is not uncommon in leukemia patients, and as I mentioned earlier, he has gained back some energy and is doing much better.

Rachel and Elliott enjoying some playtime

Fortunately we have help to balance out work, hospital, and the kids.  My mom took Laurel for the week so she can continue her routine, and our nanny, Rachel, has been staying with Elliott during the day while William and I are at work.  Rachel has been with us for a month now and is awesome with taking care of Elliott during the day.  Elliott quickly adjusted to having Rachel around and is very comfortable with her, so it gives us great peace of mind while we are away at work.  While here is the hospital, William and I have been swapping out spending the night with Elliott.  Thank goodness for an Aero Mattress!!  It makes the sleeping arrangements a bit more comfortable.  Tonight it my night, so I had a free moment to make a quick post while Elliott is sleeping.  But... I may actually take advantage of a moment to go to bed at a decent hour.  We anticipate being able to go home tomorrow, but we'll be back next week to hopefully start the next phase of chemo.  Unfortunately it requires 4 hospitalizations for 2-4 days at a time while he receives a high dose of methotrexate, so we'll keep our bags packed.

Thanks again for your prayers and support! 

Day 87: Not So Good Week

Day 82: Only one treatment last week, but it was a long one

Though he only had one chemotherapy treatment, this past week was a little rough for Elliott. It usually takes a few days for the chemo to finally catch up to him. This time, however, the previous two weeks of 4 chemo treatments each all seem to have hit him all at once. He has been cranky and irritable all week. Elliott has never been much of a crier, but recently he has been having hysterical fits and we have had no way of knowing what is wrong or how to help him. He wanted to be held all the time last week and would not let us put him down, even when he was asleep. The entire week Kyllan and I traded off and stayed up with him throughout the night. (Kyllan probably took a few more turns than me.) Saturday he finally let us put him in his crib, but I think that was just because he was exhausted. He had a much better Sunday and we are hoping that he is in better spirits come Monday morning.

That isn't to say there haven't been any smiles this past week. All this baby holding in the middle of the night, while everyone else was asleep, made for some good bonding time. Actually, Elliott disliked being held before his diagnosis. Laurel was big on cuddling, and still is, so Kyllan was little down about the fact that Elliott would never cuddle with her. An exhausted Kyllan was beaming ear to ear all week with Elliott laying on her.

Just one treatment this week.

Day 86: Elliott helps me grade exams. I am holding him because he would scream hysterically whenever I would put him down. The jury is still out on him being right or left handed.

Day 77: Getting ready for his transfusion